Hospice and Structural Racism

Don’t go there; please don’t go there, she thought to herself as her patient began to complain about the country going to hell because of Black people. Adding insult to injury, he ignored the obvious fact of her race—to him she was invisible, an “other.” Although hurt and angry she said nothing, knowing her supervisor would tell her, “Well, you know he is demented; we don’t want his family to fire us and choose another hospice.”

Hospice has a long tradition of providing person and family centered care for those who are dying. That’s as it should be. NHPCO’s website statement on structural racism and health inequities commits to eliminating structural racism that creates barriers to care for all. The organization demands “that every life be valued and respected.” Do these same principles apply to hospice service caregivers?

How does a hospice organization prepare and support its employees who experience patient and/or family bigotry (racism, sexism, homophobia, transphobia, xenophobia etc. and the intersection of these)? Would supervisors at your workplace respond as the one above? If so, what message is being sent to the hospice worker? Why should the staff suffer racist or other oppressive forms of abuse, in deference to a patient because he is dying?  What is being said about relative worth—about value and respect? And, how is focusing on the bottom line different than arguing slavery was a necessary evil for the sake of the economy? These questions warrant honest conversations.

Hospices are further challenged knowing a client’s preference for hospice caregivers based on race, ethnicity and gender leads to better outcomes and symptom management. Of course it does, don’t we all feel better when we have our way? Those of us who pursue social justice must ask at whose expense. Change will not come without pain, especially for those who assert superiority. Just as confederate flags must come down despite the blow to “southern pride,” the bigoted requests and behaviors of patients/families must not be tolerated. Otherwise, the status quo will remain, and staff on the receiving end of such inhumanity must continue to numb their souls. Is that a fair exchange for better outcomes and symptom management for the patient?

Hospice providers have a moral obligation to equally value the worker by empowering her to respond, “I understand that is how you feel but it’s not my view; please do not say those things to me.” Further, hospices must have clear equity policies that guide decision-making and offer training and support to staff when these inevitable indignities are visited upon them.

Let’s let patients and families know, “Although our hospice strongly supports patient preferences, we will not when they are based on bigotry. Would you like us to refer you elsewhere?”

 Eliminating structural racism requires making difficult decisions.

Robert A. Washington, PhD
Retired Hospice Clinical Director
Washington, DC

Image: Harvard Business Review